Night jerking getting worse

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sandalka
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Date Joined Mar 2018
Total Posts : 8
   Posted 5/7/2018 11:24 AM (GMT -6)   
I've read that many people with Lyme have muscle twitches/jerking, however I didn't find any answer as to what it is - a Lyme symptom or something caused by Lyme treatment. Can you please share how it was for you?

My muscle jerking is only at night when I am about to fall asleep and can last all night long. It started with Lyme treatment and is getting worse. My other symptoms are gone. When I stopped all the treatments, I had occasional bad nights after some emotional events. I restarted the treatment with abx and herbs and it's becoming worse, I jerk almost every night. I can't sleep now at all.
I am not sure what to do. My LLMD does not see it as a Lyme symptom, but more as something caused by Lyme, mineral depletion, etc. What is your experience? Better to continue the treatment or focus more on detoxing and body support?

I would really appreciate to hear about your experience

Girlie
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Date Joined May 2014
Total Posts : 32558
   Posted 5/7/2018 11:42 AM (GMT -6)   
I had both - twitching and jerking - they are different.

My jerking was also at night before falling asleep - just my right leg. But I still managed to fall asleep.



So if your LLMD thinks it’s not a symptom but caused by mineral depletion - what has he advised you to take?

I think it’s a symptom - were you treated for Bartonella ?

Magnesium supplementation may help.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

sandalka
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Date Joined Mar 2018
Total Posts : 8
   Posted 5/7/2018 1:05 PM (GMT -6)   
Thanks, Girlie

We started Myers cocktail IV, but I don't feel it's helping.
Magnesium helped at first, but no longer.

I've been treating for Lyme, Bart and Bab, it seems this thing just gets worse..

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32558
   Posted 5/7/2018 1:10 PM (GMT -6)   
How often is the myers cocktail? Do you know how much magnesium is in it?


and how much mag were you taking?


sometimes it needs to be in higher dosages - I used to take more - I think it was 800 mg per day.
I take it in the glycinate form - which doesn't usually cause diarrhea in higher doses.
And it didn't for me.

Maybe treating whichever infection is causing it - is the only way to resolve it and it could take time.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Fronton
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Date Joined Sep 2014
Total Posts : 443
   Posted 5/7/2018 1:58 PM (GMT -6)   
I had this really bad in the beginning too. Every time I would fall asleep I would jerk awake.
It went away mostly with treatment, although I still get it when I nap in the day, as well as a few times per week at night. Magnesium is not the answer as it is bacteria-induced, not a mineral deficiency.
The only pattern I can put on it is stress. I do find when I am extra stressed out, it triggers them.
I find it interesting that even a healthy person gets the occasional hypnic jerk....I know I did before Lyme.

Post Edited (Fronton) : 5/7/2018 2:13:43 PM (GMT-6)


WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1672
   Posted 5/7/2018 1:59 PM (GMT -6)   
I think it's a symptom, too.

I had leg jerking and sometimes whole body jerking when falling asleep. A few years ago it was more frequent, but I've had it again recently. Honestly never thought much about it. Thought it happened to everybody.

After I startex antimicrobial herbs, I had some episodes of hard jerking in my legs or feet and a spasm at the top of one shoulder. It didn't happen often, but I had never had anything like it until I started treatment. Treating bart and Lyme.

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1672
   Posted 5/7/2018 2:04 PM (GMT -6)   
Fronton said...
I had this really bad in the beginning too. Every time I would fall asleep I would jerk awake.


Oh yeah. I forgot about that. When my symptoms first started in 2009, I had terrible insomnia and I would jerk myself awake literally all night long, feeling like I wasn't breathing and was going to die in my sleep.

Not sure even now if that was Lyme, bartonella, or babesia.

sandalka
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 5/7/2018 3:17 PM (GMT -6)   
Thank you all for sharing. With your experience I have to believe it will go away eventually. It's still not clear, though, why all my other symptoms are gone, but this one is getting much worse.

It's exactly like you describe, WalkingbyFaith, except I've been on the treatment for over a year.
Absolutely agree with Fronton, it's stress related. If my day is a little out of the ordinary, I have jerking. Interestingly, I recently had a surgery, and I had no issues for a couple of weeks after... until I resumed my normal life.

Magnesium did wonders in the beginning, Girlie, but not anymore. I am taking 500mg plus the cream. Not sure how much is in Myers cocktail, anyway we tried it once and don't think it was helpful.

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1672
   Posted 5/7/2018 3:51 PM (GMT -6)   
Oh, surgery.

That's one of the things that triggers relapses for some. Any kind of unusual stress to the body/mind/spirit- surgery, trauma, acute infection, divorce, loss of job or loved one, etc.

Do everything you can to boost your immune system - immune supporting herbs, Vit C, nutrients, antioxidants, and force yourself to REST even if you feel like you could keep going.

Please take care.

Kat1000
Veteran Member


Date Joined Feb 2017
Total Posts : 662
   Posted 5/7/2018 4:11 PM (GMT -6)   
I've had the twitching in my legs and under an eye. I also would get pulsing in various parts of my body. I've been treating a year know for lyme and bart, mostly bart the last several months. I am mostly, thankfully, symptom free though I still get some feet/back pain when I first get up and sometimes still have the fatigue. And when I'm really tired, I can feel a twitch here and there - always when I lay down to go to sleep.

Keep working on your immunity and your body to keep fighting. I honestly don't believe we can get rid of 100%, but I believe we can feel like we have once our bodies our strong enough to take over. And yes, every and any stressor presents a bigger challenge for us than those that have not had lyme.
MTHTR single mutation; Positive Igenix IgG Jan 2017; March/Apr '17: doxy, Tinizadole. 5/1 samento and mino/tini. 5/28- back to doxy, added activated charcoal. 6/9 - stopped antibiox; staying with samento, red root and houttiya and supps. tried LDN; 8/24 rifampin, samento, red root and supps. On and off rifampin. 1/1/18 - 1/20 rifampin. Herbs and vitamins only now.

Village Crazy Lady
Regular Member


Date Joined Feb 2017
Total Posts : 374
   Posted 5/8/2018 12:06 AM (GMT -6)   
Have you tried burbur-pinella drops? It has helped me with this, if I remember to take it several times a day and before bed.

I hope you have better days soon.

VCL
~~~Your Life is an Occasion, Rise to It ~~~

Lyme,Bart,Molds,Candida,Cpn,Myco,Ebv,Cmv,MTHFR,Lead.
Symptoms for years and years, Diag 6/2016, LLMD 10/2016
Treating with Abx and company

sandalka
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 5/8/2018 9:24 AM (GMT -6)   
Thank you all! I guess I underestimated the surgery impact on my body.
Also, as you say it's a Bart symptom, I will have to revise my Bartonella treatment. Looks like it might not be enough.
I tried Pinella drops twice a day with no noticeable change.

Spanish
Regular Member


Date Joined Sep 2017
Total Posts : 136
   Posted 5/9/2018 12:51 PM (GMT -6)   
Hi the jerking is one of my worst symptoms and got much worse when I started treating. The jerks were studied by my neurologist with an EEG and diagnosed myoclonic jerks a type of epilepsy... Im sure this is just caused by the lyme or coinfections as i never had this problem before but the epilepsy drug valproic acid has stopped them completely..

I have also seen Buhner mention valproic acid as a treatment he uses sometimes

Post Edited (Spanish) : 5/9/2018 3:18:47 PM (GMT-6)


sandalka
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 5/9/2018 2:20 PM (GMT -6)   
Interesting! I'm on a Buhner protocol, but didn't find this info. Thanks, I'll ask my doctor about it.

PDXtransplant
Regular Member


Date Joined Jun 2017
Total Posts : 207
   Posted 5/12/2018 3:44 PM (GMT -6)   
I've had this--sometimes individual muscle twitching, sometimes a full body jerk, also when i was about to fall asleep. It seems to require a lot of tinkering with treatment to go away. I thought it had fully gone away but then recently I've been going through a lot of stress and it has returned. not as bad as before, but hoping as my stress levels go down it goes away.

sandalka
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 5/14/2018 7:39 AM (GMT -6)   
PDXtransplant, thanks for sharing. Did any specific treatment helped with that? How were you treating?

Kat1000
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Date Joined Feb 2017
Total Posts : 662
   Posted 5/14/2018 7:56 AM (GMT -6)   
Stress definitely impacts me. I also wonder if a couple decades ago when I would feel something in my legs when I rested at night, and my doctor suggested it was restless leg syndrome, was it lyme?

The night terrors, the jerking awaking, all of that...lyme?

Have you tried acupuncture? I found a good one who was helpful for these issues.
MTHTR single mutation; Positive Igenix IgG Jan 2017; March/Apr '17: doxy, Tinizadole. 5/1 samento and mino/tini. 5/28- back to doxy, added activated charcoal. 6/9 - stopped antibiox; staying with samento, red root and houttiya and supps. tried LDN; 8/24 rifampin, samento, red root and supps. On and off rifampin. 1/1/18 - 1/20 rifampin. Herbs and vitamins only now.

sandalka
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 5/14/2018 1:46 PM (GMT -6)   
I am wondering the same, but I'm sure it is connected somehow.

I am actually afraid of acupuncture now. Maybe it was a coincidence, but that's how my all Lyme symptoms started. We were trying to increase my energy and after a few weeks of intense acupuncture I lost my sleep. So now, I'm ok to do any massage, but really try to avoid acupuncture.

sgirl11
New Member


Date Joined May 2018
Total Posts : 11
   Posted 5/14/2018 3:00 PM (GMT -6)   
How long have you been treating for? It will take time, but it will go away. Try treating for bartonella for the restless leg syndrome feeling

Kat1000
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Date Joined Feb 2017
Total Posts : 662
   Posted 5/14/2018 3:58 PM (GMT -6)   
I have a really good acupuncturist, but one time I went to her partner when she was out and hated it.

I rarely feel the leg twitching anymore. Usually when I'm really tired or stressed. I was off my clean diet this weekend too and that always stirs things up in a bad way.

The rifampin helped get me over the hump with bart. I was doing that with Buhner's then switched to biopure cocktail. I've been treating just over a year, so I should be more patient about reaching the finish line.

PDXtransplant
Regular Member


Date Joined Jun 2017
Total Posts : 207
   Posted 5/14/2018 7:12 PM (GMT -6)   
The most recent stuff I'm on has really helped.
I'm on
MC-BAB-2
Cryptolepsis, Sida Acuta, Alcornea,
Sculleteria Baical, Licorice, Isatis
plus chlorella and SF722.
When I was first diagnosed last june i was on minocycline and cefdinir for about 2 months, plus flagyl for only a week. But the muscle twitching only went away recently.

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1246
   Posted 5/14/2018 8:13 PM (GMT -6)   
Sounds like parasite-have you treated parasite?
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